Shawn's Battle Against Hodgkin's Disease
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Shawn's Battle Against Hodgkin's Disease |
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I am a bit late it writing this and should had done so sooner. Thank you to everyone that donated at the Game Day benefit and thank you to those that donated from the ADVRider forum. The total amount donated was approximately $5,000. Thank You!
I'll try to keep this updated the best that I can.
In addition to this page, Gloria has set up a page on the CaringBridge web site which may help in filling in the gaps for when I do not find the time to make updates here. You can visit Shawn's page on the CaringBridge site here. There is guestbook there that you can use to leave messages to Shawn and the rest of the family.
April 1, 2009
Things are not going well for Shawn. The disease appears to be too extensive at this point. One of the doctors told us that it looks as though there is some liver involvement. Due to the liver problems, Shawn is not very alert and just not coherent at times. We were not expecting the situation to turn so quickly. I recommend that anyone wanting to keep up with what is going on to go to the Caring Bridge page.
March 17, 2009
Shawn is back in the Hospital. The fluid build up around his left lung appears to be caused by the cancer and not by any sort of infection. They are going to drain the fluid that has built up around his and then inject an irritant that will cause the lining around his left lung to stick together. This will prevent the fluid from building up in that area. They will probably do this procedure on Shawn soon. If not today, they should be doing this within the next couple days.
March 4, 2009
Last Friday, Shawn went back up to Hopkins to have the fluid removed that has built up around his left lung. They removed 1.5 liters of fluid. That's a lot! The doctor said that they could have removed more, but they had to stop because Shawn's breathing became shallow. Shawn's breathing became shallow because he was having pain if he breathed any deeper. His left lung was not used to being expanded to its full capacity and that was what was causing the pain during breathing. Shawn has recovered from that problem. Now we are waiting for the lab results on the fluid that they removed from around his lung. They need to determine the cause of the fluid build up based on the lab results before deciding what the next step will be.
February 24, 2009
Yesterday Shawn had his appointment with the pulmonary specialist at Hopkins. The visit went well in that there is some hope that Shawn's lung problem might be something that the can resolve for the bone marrow transplant. What we know right now is that there is a lot of fluid around Shawn's left lung and this is limiting his breathing ability. The problem is that we do not know exactly why the fluid is there. It is possible that the fluid is the result of his pneumonia and that combination for the treatments and the disease is makes it more difficult for Shawn's body to take care of the fluid build up. The other possible causes of the fluid build up is a possible infection or the possibility of some of the cancer to have made its way between the linings around the lungs. Shawn will be going back to Hopkins to have the fluid removed and they will have the fluid tested to try to determine why the fluid build up was there in the first place. Once this is resolved, Shawn will need to go back to repeat the pulmonary function test. If he passes that, he will be back on track for the transplant.
January 29, 2009
Shawn had a few appointments at Hopkins during the month of January, but he is stuck in a holding pattern at the moment. Shawn has not yet recovered sufficiently from the pneumonia because there is still some fluid in one of his lungs. This has caused him to do poorly for his Pulmonary Function Test (PFT). The PFT is a part of the prequalification testing that Shawn must pass in order to qualify for the bone marrow transplant. Shawn had a CT scan a week ago and it showed that he has not yet recovered from the pneumonia and will need to have the pneumonia cleared up before repeating the PFT test. Shawn has an appointment with an allergy and asthma doctor at Hopkins on Feb. 23, which is almost a month away. I guess we wont know much of anything else until then.
December 24, 2008
Shawn and I went to Johns Hopkins last week to consult with the doctor there. We'll have to restart the whole process again. Shawn will have to go through all of the prequalification testing again. If Shawn qualifies after that, they will send the information over to the insurance company to see if they will cover the transplant. Shawn's pneumonia seems to be getting better. Shawn has an appointment with the pulmonary doctor on Dec. 30th. Hopefully the doctor will have some good news and Shawn's pneumonia will be cleared up.
December 11, 2008
Shawn has had pneumonia since the weekend prior to Thanksgiving. He had spent about a week in the hospital due to the pneumonia and has been home for the past week and a half. Shawn has an appointment back at Johns Hopkins on Dec. 18th and we will see what they recommend based upon his current state of health. The good news is that it looks like we may have resolved his insurance problem in getting coverage for the transplant. The concern at this point is his current state of health. We really need to find out what is going on with the pneumonia. Shawn had a bronchoscopy yesterday and they took a sample to help determine if there is an infection and what kind that is causing Shawn's pneumonia.
November 7, 2008
Shawn met with his oncologist this week and the oncologist told Shawn that he was discontinuing the current chemotherapy treatment. The chemo is not working as we have hoped. While this is a disappointment, we were informed that there was a good chance that this chemo would not work. Hopefully we will have new insurance coverage for Shawn very soon. Once we have the new coverage we will see if we can get Shawn back to Johns Hopkins. If not, we will go to M. D. Anderson to see what help they can offer.
October 10, 2008
I was wrong about Shawn's current chemotherapy. They normally give this chemo for six months prior to doing the stem cell transplant. I guess I assumed it was given on the same schedule as the previous chemo, which is given for two months prior. Shawn's doctor has told us that we should meet with the transplant doctor to discuss doing the transplant sooner because he thinks that the chemo is not working as well as he was hoping for.
October 7, 2008
It has been about a month since Shawn started on the new chemotherapy with another month to go before we know how this chemo is working out. This one does not make Shawn as sick as the other chemotherapy treatments. At least on the outside. Shawn has had to have two blood transfusions since starting this chemo. I do not know if it is the chemo or if it is the disease that caused the anemia that prompted the need for the transfusions. It will probably be about 5 weeks before we know whether or not that this chemo has worked well enough to qualify Shawn for the stem cell transplant.
September 7, 2008
The result of the trip to M. D. Anderson is that we found out there is one more type of chemotherapy that is considered standard treatment. Due to the results of the previous chemotherapy treatments, odds aren't all that great that it will work well enough to achieve some sort of remission. We won't know for sure till we try. If the chemo works, the procedure involves what is called a autologous stem cell transplant. This is like bone marrow transplant, but they collect the stem cells from Shawn's blood stream, store it, and then transplant it back into Shawn after he has had high dose chemotherapy. We hope that at a minimum this will buy us enough time to when we are able to switch over Shawn's insurance in February to a plan the will cover the procedure at Johns Hopkins. The chemotherapy will be given over a two month period and will be a bit longer then that till we know if it is working well enough to allow Shawn to proceed with the stem cell transplant. If we get lucky, this round will put the disease in remission.
August 28, 2008
This has been a very busy week. Rather than let the set back with insurance stop us in our tracks, we have been busy this week pursuing other options. Shawn and I will be at M. D. Anderson in Houston Texas next week for a consultation. We should be able to find out later that week what course of action they suggest. Also, game day went well. Many thanks to those that donated, offered prayers and advice, and offered well wishes. More details on Game Day and recent developments as soon as I have a chance to catch my breath.
August 22, 2008
We got bad news concerning insurance. We got the denial on our final appeal, which we were pretty much expecting at this point. Our backup plan has not worked out as we had hoped, which was to get Shawn health insurance in the state of Virginia using HIPAA so that he cannot be turned down due to a preexisting condition. The importance of getting insurance in the state of Virginia is that Virginia requires that health insurance cover the costs of clinical trials that meet certain guidelines. The problem is that Shawn's current insurance does not run out until January 2009 and the new insurance company will not offer coverage through HIPAA until his current insurance runs out. The clock is ticking as Shawn's cancer progresses and we fear that waiting till January will be too late. We are still exploring different possibilities, including having the clinical trial done "off protocol", which increase the possibility that the insurance company will cover the costs. "Off protocol" means that Johns Hopkins will not be able to collect research data from Shawn's treatment. I'm not sure how much this will reduce the incentive for them to treat Shawn using this procedure. We will continue to pursue alternative options as long as it is feasible. I am open to suggestions and if you have connections or know how to get the system to work for us, let me know by email at cshaines@verizon.net.
August 13, 2008
Not much new to report other than the fact that we are still waiting to hear back regarding our second and final appeal with the insurance company. It would not surprise us to be denied this time as well. The problem is that the insurance company does not want to cover a clinical trial. We are working on a backup plan and if that works out Shawn should be at Hopkins some time around the first week of September.
August 8, 2008
As of today, Everything is on hold. We were denied initial approval from the insurance company yesterday. Shawn's doctor at Hopkins made some calls to appeal the denial. The appeal was denied and today's appointment was canceled. The insurance company will have a second appeal in hand on Monday. I'm not sure how long it will take to hear back on this appeal. We will be exploring other options if the appeal falls through. It is very frustrating to get to this point and to have the insurance company be a problem.
August 5, 2008
Shawn had his echo-cardiogram yesterday and the word today is that everything is OK and that he is clear for the transplant from a health perspective. All of the paperwork has been submitted to the insurance company. The case manager told us that the approval can take up to 30 days but she will do what she can to get it expedited. We need this approval sooner rather than later since Shawn is scheduled for the total body irradiation simulation on the 7th, the catheter placement on the 8th, and the chemo to start on the 9th. Basically, we need to hear from the insurance company in the next couple days or I fear the schedule will slip again.
July 29, 2008
We met with the cardiologist today. While he did not see any glaring problems with Shawn's EKG and MUGA scan, he wanted to send Shawn to have an echo-cardiogram done before he will give the all clear. This is the last piece that is needed before the transplant doctor can send a letter to the insurance company qualifying Shawn for the transplant. The insurance company will need to review all of the data at this point in order to determine if they will give financial approval.
July 25, 2008
Shawn has a new appointment on July 29th to see another doctor for further evaluation of his heart. They noticed something during the previous cardiology testing that they want to make sure that it is not a problem. I'm not entirely sure what the nature of the problem is, but they want to see if something that they noticed is normal for Shawn. The current schedule has Shawn starting chemo on August 8th and the transplant on August 15th.
July 23, 2008
A problem has come up that has impacted the transplant schedule with everything to start on August 8th. This is about a 10 day delay from the previous schedule.
July 21, 2008
Johns Hopkins bumped up Shawn's bone marrow biopsy to today so that they can get the results to the insurance company sooner. The insurance company wants to see the results of the biopsy before they can give financial approval for the procedure. Right now everything is a go and we continue to move forward hoping that the insurance company will give financial approval. According to the current schedule, Shawn will have a catheter placed on July 29th with chemo being administered on July 30th. August 5th which is the day Shawn receives the bone marrow transplant. After the transplant there will be no fixed schedule with the exception of daily visits to the IPOP clinic at Johns Hopkins. When any complications arise as a result of the transplant Shawn will be admitted to the IPOP clinic as inpatient until the problem has been resolved.
More diagnostic tests scheduled later this week with the transplant prep to begin next week.
July 15, 2008
Shawn had his physical exam at Johns Hopkins as well as an x-ray and some CT scans. After Shawn's physical, his doctor let us know that Shawn should be able to proceed with the transplant unless something serious occurs. Over the next two weeks they have Shawn scheduled for a bunch more tests and at least one more scan. With the current schedule Shawn will be admitted for his catheter on July 29th with his chemo starting on July 30th and the transplant to take place on August 5th. This entire procedure is done on an outpatient basis, but starting with July 30th Shawn and his caregiver will need to stay close to the Johns Hopkins should any complications arise. Since we live too far away Shawn and the caregiver will need to stay at housing facility or at a nearby hotel. There is a wait list for the housing, so it is unclear whether or not hotel room will be required. The housing is preferred since it is very close to the hospital and much cheaper than a hotel room.
July 11, 2008
The case manager at Johns Hopkins has got back to us with a schedule for the transplant. Shawn's next appointment is on July 15th. I'm not sure, but I think this is the appointment when they will decide if he qualifies for the transplant. They will do a physical exam, CT scans, a chest X-ray, as well as some other tests. This is going to be a full day at Johns Hopkins with testing starts at 7:30am and the last appointment is a bone marrow transplant education class at 4pm. We are all very anxious to find out whether or not Shawn will qualify for this transplant. More testing is scheduled for July 17th, so if they do not decide on the 15th we may get the word on the 17th.
On a lighter note, a nurse at Shawn's radiation oncologist office got Shawn connected with a salesman at the Ferrari dealership. Shawn was very interested in Lamborghinis so the salesman took Shawn out in a Lamborghini Gallardo Superleggera not to mention giving Shawn a tour of the facility and checking out all of the other exotic cars that they had there.
July 3, 2008
Shawn had an appointment with the local oncologist today to go over the results of his latest PET scan. The results are disappointing. While it appears that the radiation treatment has killed off the cancer activity in the areas being treated, the cancer has spread to other areas. The cancer has spread to his spine and pelvic bone and this explains why he has been having some ongoing problems with pain in his back and hips. It was not clear what the cause of the pain was before. Now we know. Since the cancer is in his pelvic bone, I going to assume that option 1 (autologous stem cell transplant with high dose chemotherapy) is off the table. Official word will come from the doctors at Johns Hopkins. We have called Johns Hopkins as well as making sure that the information they need is being sent to them in order to get Shawn into the next stage of treatment as soon as possible.
June 28, 2008
We received a packet from Johns Hopkins concerning the possibility of having the bone marrow transplant done there. As it turns out, the procedure is a research study. It is described as, "A Phase II trial non-myeloablative conditioning and transplantation of partially HLA mismatched bone marrow for patients with hematologic malignancies." They also refer to this procedure as a "mini-transplant". Included in the packet was sample of the consent form so that it can be reviewed beforehand. I must say that the content is sobering. The people at Johns Hopkins are still working with Shawn's insurance company to get financial approval for the procedure so that insurance company will cover their portion of the costs. Looking at the packet reminded me of something else. If Shawn goes to Johns Hopkins for the transplant, Shawn and a caregiver will need to stay within 20 minutes of the outpatient clinic at Johns Hopkins. We will likely have a rotation of caregivers. The caregiver will need to be with Shawn 24 hours a day and will keep an eye on Shawn for any complications with the BMT (bone marrow transplant), known as GVHD (Graft Versus Host Disease). Part of the reason for the rotation is so that Shawn and the caregiver don't drive each other crazy by spending so much time together without a break. I hope that there will be some Internet access available. Shawn will be having his PET scan on Monday June 30th. I'm not sure when we will know the results.
June 25, 2008
Johns Hopkins called and let us know that both parents qualify as potential donors based upon the blood
types and other criteria that they use. Final donor selection has not been made at this point since either donor can be eliminated for other reasons. Also, they want Shawn to go to Johns Hopkins for his PFT (pulmonary function test). The results from this test is one of the items that is being evaluated to determine the next course of action. As it stands right now, Shawn will not begin the next treatment plan until mid to late July.
Shawn has completed his 5 weeks of radiation treatment. He had his PET scan on June 30th and had an appointment with the local oncologist on July 3rd. The results are disappointing. While it appears that the radiation treatment has killed off the cancer activity in the areas being treated, the cancer has spread to other areas. The cancer has spread to his spine and pelvic bone. There are no more standard treatment option that could cure this. Shawn has an appointment on July 15th to be evaluated at Johns Hopkins to see if he qualifies for the haploidentical bone marrow transplant. If Shawn does not qualify this transplant, the next option is to enroll Shawn in a clinical trial for using the drug Bexxar to treat Hodgkin's disease.
The concern at this point is that Shawn's cancer did not have much of a response to the initial treatment with the ICE chemotherapy. We strongly suspect that Shawn will need the parent bone marrow transplant, but that decision will be made by the doctor at Johns Hopkins once he has the results of Shawn's tests. Johns Hopkins is one out of about five hospitals that will do this type of parent bone marrow transplant. This type of transplant involves an intentional less than perfect match in the donor bone marrow. The idea is to use a lower dose of the ICE chemo to reduce the damage to the heart and lungs. The imperfect match in the donor marrow will hopefully supplement the chemotherapy through what is called the graft versus tumor effect. In this case, the hope is that the white blood cells produced by the transplanted marrow will see the cancer as an invader and will kill off the cancer. Shawn will need to stay in Baltimore for 3 months if it is decided that this is the best treatment. He will need to stay there this long since he will need to be closely monitored for about 100 days for any complications with the transplant. If Shawn's body rejects the transplant, he will be left without an immune system and can die from any infection.
After 6 months of ABVD chemotherapy, 2 rounds of ICE chemotherapy, 2 surgeries, 3 blood transfusions, 1 blood clot, sinus infection, bronchitis, 5 weeks of radiation, and 1 year later, Shawn is still fighting.
In April of last year, we had a beach get together for the family which is the first time we had seen Shawn in a while since he had moved to Illinois. It was during this trip that my wife had noticed that Shawn had a lump on his neck. She recommended that Shawn visit a doctor when he returned home to have it checked out. Typical of a young man his age, he was not in too much of a hurry to visit the doctor and the fact that the lump had shrunk some, Shawn did not bother visiting the doctor until things got worse. In late June, Shawn did make a visit to the emergency room after he started running a fever and having pains in his armpit. During this visit they took a biopsy of one of his lymph nodes and the biopsy showed that Shawn had Hodgkin's disease. Based on his diagnosis and knowing that the treatment consisted of undergoing chemotherapy, we decided that the best thing to do was to have Shawn move back home to Virginia where we can help look after him and provide support as he undergoes chemotherapy. While we were in Illinois to pick up Shawn, we met with an oncologist there to hear what he had to say about his situation. This oncologist put a positive spin on the situation by telling us "we can cure this". This helped put everyone's mind at ease. I did bit of research in the Internet and found that the recommended treatment achieves remission for 85 percent of the cases, so odds looked favorable. We moved Shawn back home and got him set up with one of the local oncologist so that he could begin his treatment. In December, Shawn completed 6 courses of chemotherapy and had a follow up PET scan to see if the treatment was able to put the disease in remission. Unfortunately, Shawn's disease was still active.
At this point, there were two possible courses of treatment. One was radiation, but that was not recommended because the location of the growths were too close to his lungs and heart and the treatment could cause some unwanted damage. The other was high dose chemotherapy with a different set of drugs combined with a stem cell transplant(what used to be a bone marrow transplant). The plan was for Shawn to get two courses of chemo which should significantly reduce the activity of the disease or put it in remission, harvest the stem cells, get the high dose chemo, reintroduce the stem cells to get his marrow back in working order and hopefully recover with the disease in remission. Unfortunately, the first two course of chemo did not achieve the desired results and Shawn could not qualify for the stem cell transplant and high dose chemo. This made radiation the next option, despite the risks, in the hope that this will kill off enough of the disease to qualify Shawn for the stem cell transplant.
At the beginning of Shawn's radiation treatment, we made an appointment to consult with one of the Doctors at Johns Hopkins. We had a very productive visit with one of the transplant specialist there. Prior to the visit to Johns Hopkins, there were no other options if Shawn failed to qualify for the stem cell transplant procedure. Johns Hopkins offers two more options based upon Shawn's health and the results of the radiation treatment. The next treatment option is dependent upon the results of Shawn's radiation treatment and the condition of Shawn's lungs and heart. If everything looks great, the plan is to proceed with the high dose ICE chemotherapy and stem cell transplant. If the cancer is still active in the lymph nodes and/or Shawn's heart and lungs are not up to the high dose chemo, the plan is to use a parent as donor for a bone marrow transplant along with low dose chemotherapy. If Shawn does not qualify for either of those treatments, the next option is to enroll Shawn in a clinical trial for using the drug Bexxar to treat Hodgkin's disease.
Here are some PET scan images that are from different stages of Shawn's treatment.
If you would like to contact me (Carl Haines) with anything concerning Shawn's condition, my email address is cshaines@verizon.net