Nov. 03, 2008
Haley has been having terrible headaches the last two weeks. This last weekend her vision has been blurred. We took her to the emergency room today here in Lebanon. They did a CT scan found something. They then did an MRI. They are sending us to St Louis Children’s hospital. All they have told us is that there is swelling on the brain.
Nov. 04, 2008
They found a tumor on the back of her brain about the size of a large egg. Dr.Schmidt Said that 90% of brain tumors in children are benign. Surgery is scheduled for tomorrow to remove the tumor.
Nov. 05, 2008
Surgery went really good for Haley. Dr. Schmidt said he was confident he removed the entire tumor.
Nov.06, 2008 Dr. Schmidt told us he hopes the tumor is benign but that it did look more aggressive than that. They will know more when they get the pathology report back.
Nov. 07, 2008
Haley gets to go home today.
Nov. 08, 2008
We are concerned for Haley because of nausea and throwing up. This has the potential to be serious because the meds she needs to keep down are for anti-swelling of the brain and anti- seizure.
Nov. 10, 2008
The hospital called us to make an appointment Friday for another CT scan, MRI, and ultrasound of the thyroid.
Nov. 12, 2008
Haley is doing much better today. She has regained her strength and has not had to take pain medication for her surgery. And she got to wash her hair for the first time in 10 days. She is very happy about that.
Nov. 13, 2008
Haley got to see the children’s Oncologist, Dr. S today after all the tests. The news was very scary. The tumor was cancer, and not made of brain tissue so it had metastasized from another organ in the body. Also they found multiple tumors in the lungs, lymph nodes, bone and there was fluid buildup in her heart caused by one of the tumors close to the heart. They suspect thyroid as the primary cause of the cancer, but they can’t find anything out of the ordinary in the thyroid. We are going to see a thyroid specialist in the adult hospital (Jewish Barns) Nov18. We got to go hold our new bady Bree tonght. Haley was grinning ear to ear. I never thought I'd see that on a day of such devastating news. She was an Aunt now and so pleased.
Nov. 18, 2008
Today Dr.H(ENT Specialist) performed another ultrasound and said the thyroid looked clear to him as well. So he did an ultrasound guided needle biopsy on the tumor on her lymph node. He said it would take 3 to 5 working days to get the pathology report. They are trying to see if the cells are still consistent with thyroid cancer. He stated that the lesions in the lungs appeared to be shrinking since the ultrasound performed last Friday and that there did appear to be fewer lesions. He said it was possible that there was some healing taking place.
Nov. 24, 2008
Follow-up with Dr Schmidt (Neurosurgeon) – released to go back to school and to drive. Ok to get exercise.
Nov. 25, 2008
The hospital called and made an appointment for Wednesday to do a full body P.E.T. scan.
Nov. 26, 2008
Had PET scan, met with lung specialist (Dr. P). Dr. P informed us that the primary tumor (or the origin) was in the lung and that surgery was not an option at this point. Next we saw Dr H (ENT Specialist) who showed us the PET scan that showed a large tumor in the right lung, numerous small tumors in the left lung, and areas in the lower spine. This is the same doctor who told us the lesions were shrinking on Nov 18. Now he informed us the primary tumor is over one inch in diameter. Dr. S needed to discuss with the adult Oncologist, Dr. B to determine who needs to continue treatment with chemotherapy &/or radiation due to the rarity of this type of cancer and Haley’s age. It was decided that Dr B would be the treating physician. Appointment was made for Dec. 2 and would not consider an earlier appointment due to the holiday.
Dec. 2, 2008
Met with Dr. B – Diagnosis - Stage IV Non Small Cell Lung Cancer. Told us this is incurable but there are positive things such as Haley’s age, gender, general health, non-smoker, and no presence of symptoms. Only treatment - Chemotherapy- Radiation cannot be done at this time because Chemo increases chances of bleeding in the brain. It was recommended to do 6 rounds of Chemotherapy – once every three weeks for 18 weeks. The drugs used will be Cisplatin and Pemetrexed. They will do two rounds and redo the CT scan to see how the tumors are responding. Haley is not eligible for clinical trials because she is not 18. Dr. told Haley she can choose to fight this aggressively with the Chemo, choose to have no treatment and only get help with pain management in which she would have a few months, or reevaluate after two rounds of Chemo and decide whether to keep fighting. First treatment scheduled for Friday. Had to get B12 shot and start taking Folic Acid to protect healthy cells while taking Chemo. Dr. B agreed to contact St. Jude’s in Memphis and MB Anderson in Houston to see if it would be beneficial for them to evaluate the case.
Dec. 4, 2008
Dr. B’s nurse called to tell us St. Jude’s could do nothing different and Houston had received the information but had not responded so Chemo starts tomorrow.
Dec. 5, 2008
Haley had her 1st round of Chemo (Cisplatin and Alimta) today without any complications or sickness. Next round will be on Dec. 23rd
Dec. 8, 2008
We took Haley to the pool today in an attempt to get some exercise. She did have fun. But when we took her out to eat afterwards she got sick as soon as she smelt the food. They told us smell could trigger nausea. Boy did it. We have been fighting it ever since.
Dec. 9, 2008
Haley has been taking prochlorper and Lorazepam for nausea and they work great, but I can't get her to eat or drink. Nothing sounds good, and the smell of food makes her sick.
Dec. 10, 2008
Haley has been a little better today. She has drunk one 16 ounce bottle of water, eaten half of a chocolate pudding and some applesauce with sugar. She has been eating sonic chopped ice. The sonic ice was cool, she was craving it, so I went to sonic and they gave us a bag! God Bless Lebanon Sonic! We found an awesome site www.inspire.com it is a forum of cancer survivors and care givers. Talk about a big help, they have been where Haley is and had a lot of advise to help us get through this part of chemo. Also they helped me convince her that I was not the devil for trying to get her to eat and drink. Dec. 11, 2008 I took Haley to the local clinic to get some fluids in her. The Ensure was a hit for her she has drank two of them already. She also ate potato chips; she seems to be feeling much better and full of energy. Her spirits are very high today. I think she was afraid she was going to be sick much longer. She got to go watch her school choir perform tonight.
Dec. 12, 2008
Today the MRI showed another tumor forming on the back of the brain 7cm in size in the lower area of the brain. Dr S said this was not a good sign in that it indicated it was aggressive. They now want to stop chemo and start radiation next week on the whole brain.
Dec. 16, 2008
GOOD NEWS!!!!!! The Dr M radiologist oncologist went back to review all the MRI’s on Haley. He noticed on the MRI done the day of the surgery, that this new tumor was already present, just not as visible. That is good news. The Neurologist missed this. He thought the cancer was very aggressive and had developed a new tumor and grown to .7mm in two weeks. So what this does for us is allow them to treat the area of the brain with the tumors with a gamma knife radiation instead of whole brain radiation. There are a lot less risk of permanent side effects with a gamma knife. Also, don’t have to postpone Chemo as long. A gamma knife is a one day treatment. Not every day for two weeks. So we go back on Dec. 31st for the radiation and resume chemo Jan. 6th.
Dec. 31, 2008
Haley had her scheduled gamma knife radiation today. This sometimes takes all day but they had no other patients today so it allowed them to concentrate only on Haley. After the treatment she had a bad headache, then a little nausea but in about an hour all that was gone and she’s feeling much better now.
Jan. 6, 2009
Haley had round two today with chemo (Cisplatin and Alimta). Everything went well. She was really tired. We met a nice young lady who was sent to us from the children’s hospital to help Haley find things to do while taking Chemo. She came up with some neat thing. She is going to get Haley some music to listen to and crafts to work on for future appointments. I asked about testing the tumor for gene mutation as requested by Dr. West. Dr. B assured me they did all of the necessary tests there. I requested for them to send it to the mayo clinic in Minnesota. She said she would.
Jan. 9th 2009
We took Haley in for fluids today. She hasn't taken on enough fluids again. It hasn't seemed to work as effective as before.
Jan. 11, 2009
Haley is doing much better today. She went to church both morning and evening. First time she'd been out since Chemo. Jan. 13-16, 2009 Back to school!! She is so happy to be back. Jan. 21, 2009 Emergency room visit today for headache and nausea. Did CT scan on the brain and everything looked good.
Jan 23, 2009
CT scan today.
Jan. 27th, 2009
(round3) I just got back today from taking Haley to Chemo (Cisplatin and Alimta). Sploosh is the new code name for Chemo because Haley HATES the word Chemo. The primary tumor in the lung has shrunk 17 % and many of the tiny lesions have disappeared. On the way home traffic all but stopped because of the snow, so we took the next exit and stayed at a motel. This turned out to be an awesome time with my girl. We went swimming in the pool. Haley just had a blast. Unbelievable as she just got done receiving her Sploosh. Up until now the Sploosh either made her super sick or too tired to walk, and we were swimming!
February 4-10th 2009
Make a wish trip! It truly was magical!
February 20th, 2009
(round4) Sploosh (Cisplatin and Alimta). It was decided that since Haley was tolerating Cisplatin so well and her blood work was looking really good to continue with two more rounds.
March 12th, 2009
Ct scan with contrast.
March 13th 2009
(round 5) Sploosh today (Cisplatin and Alimta) B-12 shot .We have 25% shrinkage of the primary tumor in the lungs and the lymph nodes are clear.
March 30th 2009
MRI on the brain to see how the gamma knife is working on the 7cm tumor. Dr M of radiation oncology said that it looks good. We have 50% shrinkage on that tumor. April 3, 2009 (round 6) Sploosh (Cisplatin and Alimta) April 15, 2009 Took Haley to the headache clinic today. They gave us a preventative to take every night. April 30th.2009 CT scan. May 1st 2009 (round 7) 13% shrinkage on the primary tumor in the lung. Today we go on what they call maintenance sploosh. Just the Alimta. May 22 2009 (round 8) Sploosh (Alimta). B-12 shot
June 1st 2009
Dr M said the brain tumor has shrunk down to the size of a pencil tip...
June 1st 2009
June 12th 2009
(round 9) Sploosh (Alimta). Dr B said there is a little more shrinkage in the lung mass with no change in the bones.
July 10 2009
(round 10) Sploosh (Alimta) today was rough on Haley. They are having trouble hitting her veins. Ten rounds of Sploosh have taken a toll on her veins. They stuck her fourteen times today. They finally had some angel from children’s come and start it. God bless her soul! We have scheduled an appointment for surgery to insert a port. Haley is scared about this. I think the main thing is it would be admitting she is sick. A port is for old people…lol
July 15 2009
Children’s eye clinic today. It was decided Haley needs glasses.
Aug 12 2009
Today was CT scan and surgery for the port. Everything went well.
Aug 14 2009
(round 11) Today was the first day of sploosh (Alimta) B-12 shot with the new port. It did hurt her today. But she said it was better than 14 sticks. Dr. B said everything was stable, no mention of any shrinkage this time. She also informed us she was getting ready to go on maternity leave. Like we couldn’t tell….She's all belly. Dr is a tiny Asian lady.
Sept 2, 2009
(round 12) Sploosh (Alimta and Zometa) Dr B is out on maternity leave. She had a baby girl. So in the interim we were to see Dr.GOODGAME (no really that's his name) Dr Goodgame decided that a sploosh drug called ZOMETA would be beneficial to her. It is strictly to help the bones gain strength. The side effects are low grade fever.
Sept 9, 2009
Haley is still sick today. She is getting real low on energy now after 6 days of being sick. She threw up on the way to the clinic and once in the clinic. They are giving her 2 bags of fluids to try to get her strength back. Also gave her a shot for the pain in her bones.
Sept 11, 2009
Haley went back to school today for a half a day only to have to miss Monday. We have to go to St. Louis for a MRI on the brain to check the status of the brain tumor. She was happy to be able to return today though. She talked to the school counselor today to see what to do in some of her classes. Also today is Cassie’s Birthday. HAPPY SWEET 16!!!
Sept 14, 2009
It has been 9 months since the gamma knife treatment. Dr M said the tumor is barely visible at all and that there are no signs of any new ones trying to develop. Haley's next scan will be Dec. 14th. 12:10 At Children’s Hospital And 1:30 with Dr M at Jewish Barnes
Sept 17, 2009
Haley just informed me of sharp pains in her lung. She said this has happened off and on. She hasn't told anyone up until today. I probably still wouldn't have known but it brought her to tears while talking to Colleen. Going to ask Dr. I explained to Haley that she must tell the Doctor all symptoms so they can make good decisions on her treatment plan.
Sept 18, 2009
I called Haley's nurse Teresa today and informed her of the pain Haley was experiencing. She talked to the Dr and she decided to have me take Haley to the emergency room here in Lebanon. They wanted to have an x-ray. They were concerned for the possibility of a blood clot. The Lebanon Dr said that since her blood oxygen level was at 96% and her heart rate was at 68 that it was unlikely to be a blood clot. Levels would have been lower and rate would have been much higher. The x-ray was all clear. No fluid buildup or signs of pneumonia. They gave her an anti inflammatory med. They said it was probably just referred pain.
Sept 23, 2009
We went to the Lebanon hospital today for the cat scans. It is the first time having it done locally. Haley hates to travel. However, Lebanon had her drink contrast die. It was nasty. So I asked Haley which was worse drinking the nasty drink or traveling 6 hours. So was not so sure.
Sept 24, 2009
Haley stayed home sick today. She is complaining of pain in her bones. More specifically the hips. Also of a sore throat. Sept. 25, 2009 Today was supposed to be sploosh day, but Dr W wanted to do a bone X-ray of Haley's hips to see if the bone is getting soft. If so they will do bone radiation for 10 days. They can't do both sploosh and radiation at the same time so the Dr decided to hold off today on the sploosh. She said they wouldn't know anything until Monday. They did go ahead with Zometa. And gave her a flu shot.
Sept 28, 2009
Dr. W called today with the results of the bones X-ray. She explained that the cancer is actually in the pelvic area and not in the hip bones and that it wouldn't be a good idea to do radiation in those areas. The way she explained it is that you have to maintain a good level of bone marrow in order to receive chemo and that the pelvic area produces the highest bone marrow count in the body. So if they give radiation to both sides of the pelvis it could weaken it for breaks and lower the blood count which would interfere with getting chemo. She is going to do some research and see if she can come up with any ideas that might help with Haley's pain and call back in a couple of days. She said it's not usually normal for people's pain to get worse over time and she's not sure what might be causing it but is going to do her best to come up with some ideas. The good news is that Haley doesn't have any soft spot that they are concerned about breaking. So she is going to give Haley another week to try and get over this cold she has and give her another round of sploosh.
Oct 8, 2009
Oct 13, 2009
Dr. W called late yesterday afternoon and said the bone scan looked good. There’s not widespread bone disease just in the pelvic area like we already knew so they aren’t going to do any radiation because that is the area where most of the morrow is produced and it would be too risky. We go next Friday Oct.23rd For chemo. The bad news is there isn’t really anything they can do about the pain she has, just pain pills.
Oct 20 2009
Today was a tough day. I woke up to a loud thump. It was Haley hitting the floor in the bath room. I rushed in to check on her. She was lying in the floor crying. She had hit her head on the counter top on the way down. She had a cut across her eye. She has having dizzy spells the last few days. We think it is from dehydration. She needs to drink more. With all the meds and sploosh she has had its more important to stay hydrated. The Dr in town thought that is what's going on. We do go to St. Louis Friday so we will inquire then as well. After we went to the Dr we went shopping for things for her to drink. She got to feeling better. Things like, Dad you are going to jail, I'm telling everyone you hit me. Whatever! Then she started dancing in the middle of the aisle at price cutter. As people began to stare I'm like Yeah don't mind her… she is out of school today because she is sick... Oh boy! She did stroll into school today like about 10 am. I was so upset this morning, but you know what, I wouldn't have traded that time with Haley for nothing.
Oct 23, 2009
(round 13) Well Haley had her 13th round of sploosh (alimta). She was unusually loopy. I don't know if she was just delirious or what. She laughed all the way home. She is home from school today as the sickness is still holding her down. The Doctor requested a private session with Haley this time. Not sure what for, Haley has not talked about it. We are back on our sploosh every three weeks now. We should also be getting Dr B back from maternity leave.
Oct 28, 2009
I took Haley in to the clinic yesterday. They gave her three bags of fluids before she went to the bath room. She is very weak. 8pm last night I took her in to the emergency room. She was throwing up every little bit. They gave her some more fluids, morphine for her headache and anti nausea medicine through the IV. Also gave her a prescription for a cream that she can rub in since she can't hold anything down. Nov 13, 2009 (round 14) Sploosh (Alimta and Zometa) Dr B is back. Got the B12 shot today as well.
Dec 10 2009
Dec 11, 2009
(round 15) Sploosh today. (Alimta) Disease is stable no change Dec 22, 2009 (round 16) Sploosh (Alimta and Zometa)
Jan 8, 2010
Dr Mr said everything looked fine on the brain scan.
Jan. 15, 2010
(round 17) Sploosh (Alimta and Zometa) and b-12 shot. This was one tough day for my little Haley. To put it bluntly it just sucked! We started the day as usual. Just there for her third week dose of sploosh. Haley had had some real struggles with headaches. Dr B was very concerned and wanted to do the brain scan today. They were unable to get her in until 6:30pm. So we did our sploosh and waited all day. As we were headed home Haley said: “uh dad we have a problem…..they left my port access in” we were 21 miles from St. Louis, We called St. Johns in Lebanon and asked if they could remove it they said they could not answer that. So we turned around and headed back for St. Louis. The receptionist said the nurse said sorry but they did not access the port…When I explained that was not possible as the Dr already read the report. So they had to have put the contras in. We could not leave until the Dr read it. They were considering admitting her into children’s hospitable. The receptionist then said she did not use the port but did an IV. I then explained that also was not possible. Finally the nurse came out and said she did not remember accessing her port. I explained that I just needed it removed please. They told me they could not do that that we had to go to 24/7 care. So here we go. By now Haley is getting sicker than a dog. So I remain calm and take her to the urgent care. They began taking her weight and processing her like we were there for urgent care. I said: excuse me we are not here for treatment we are here to get her port access removed. They said they were sorry but they had to check her in because the place that we just came from was closing. Closing? They could not take 5 minutes to do what they should have done before we left St.Louis? She said I’m so sorry. So not wanting to embarrass Haley I said ok. I could not believe they were going make her go through all the crap and then charge me for it too. SO they take her back. 30minutes later I asked the receptionist how long does it take to flush the line and pull it out? This country boy has seen it enough times I would have no trouble. She laughed as I said it in a joking like manner. But I did mean it. So I walked back to check on Haley and see what was taking so long. I could not believe my eyes. The nurse on her knees holding her hands over Haley’s port trying to stop the bleeding. The nurse looked at me and said I’m sorry sir…I forgot to flush it before I pulled it out. I looked at Haley; she just looked at me with a sad face and began to laugh. The nurse said well I’m glad she can laugh. I guess she did not see the tear in the corner of her eye. Dad sure did. So we finally got home around midnight. But the good news was that the tumor on the brain was unchanged. So they are sending her to a pain management Dr.
Feb 5, 2010
(round 18) We got Haley sploosh (Alimta) round #18 today. We also went to go see the pediatric pain management Dr. J. He was different to say the least but in a good way. He took his time evaluating Haley. We were there from12:30 tell 4pm. He is trying some new meds and also told Haley some tricks to try to help Haley not focus on the pain.
Feb 24, 2010
Feb 26 2010
(round 19) Sploosh (Alimta and Zometa) Disease is stable
March 1, 2010
Admitted into Hospital for vomiting and dehydration.
March 3, 2010
Called and asked about testing for the ALK gene mutation.
March 23 2010
Sploosh is cancelled.
March 30, 2010
(round 20) Sploosh (Alimta) b-12 shot Dr B told Haley she was stable and felt it would be an acceptable plan to stop sploosh and just monitor the disease since Haley had had so much trouble with nausea. I expressed my concerns knowing that this disease would not go untreated and once it started to grow again, what stopped it before might not work the next time. She told me I did not understand….if she decides Haley is not tolerating treatment, there is nothing I can do to get her treated, that is her call to make not mine. She also asked to speak with Haley alone. Haley had asked about the possibility of her ever having children. She asked to speak with Haley in private and told Haley that when her and Cody were ready to start having children to come talk to her and she would help them achieve this goal. This is very dangerous to me. It sends the message that it is ok to risk the possibility of getting pregnant.
April 7, 2010
A lady by the Tiffany added me as friend on face book. She is a scheduler for a lung oncologist professor. She asked about the ALK gene mutation. I told her I did request that Haley’s tumor be sent to the mayo clinic to be tested for ALK because of some friends on inspire.com. But they never informed us of the results. I will try to get an update tomorrow.
April 12, 2010
I was unable to find out if the tests were run or not. The nurse had no idea. (You never get to talk to the Doctor) So I signed a release today for Tiffany to find out if they ran the test or not.
April 13, 2010
Found out today no molecular analysis was performed. This really disturbs me. This is Dr B’s way of doing everything that can be done in which she assured me we were. Not running the test I requested and then telling me it is time for NO treatment. Had she run the test and took just a minute of her time she would have known we had an alternative. She has treated Haley like an 80 year old woman from the beginning. Making Haley tell if she wanted to fight this or just keep her comfortable till she dies..A 15 YEAR OLD!?!?!?. She also told me Haley is not all that rare when I asked her why are we not interested in finding out why a teenager has lung cancer. I thought Haley would be a case study to the medical field as none of the causes applied to her. She told me she has many young lung cancer patients around Haley’s age. From what I see that was simply a lie. I asked many of the infusion nurses and they all say they have never heard of a teenager having lung cancer. Well it’s clear I am very angry today!
April 22, 2010
Found out today Haley is ALK positive!!! Thank you Tiffany!!! April 28, 2010 Had appointment with Dr B today to discuss the results of the molecular analysis that Dr C from the University of Colorado Hospital performed. I was amazed at Dr B's demeanor. She was very kind and exited for Haley. Everything inside of me wanted to ask her why she did not have Haley tested so we would have already had this information to consider. She certainly did not offer any explanation or acknowledge that she didn’t. It was like we never had our conversation where I asked her to send the tumor to the mayo clinic to be tested. I held my tongue. I did not want to do that in front of Haley. Also nothing good can come from that now. It’s too late.
May 7, 2010
Baseline CAT and MRI scans for trial May 10, 2010 Started ALK inhibitor! We are going back to children’s as this is a pediatric trial. Her new oncologist is Dr H; I’m concerned about the 40 days between treatments. Just two days shy of 6 weeks. If only Dr B would have ran the test as I requested it could have been a smooth hand off between the treatments. (It’s so hard to turn the other cheek when your daughter’s life is on the line)
May 21, 2010
Took Haley to the Lebanon ER. Haley’s running a low grade fever and has stomach and chest pain. They stopped the ALK inhibitor drug tonight.
May 22, 2010
Took Haley by Ambulance to Children’s. They want to keep a close eye on her as her ANC is dropping.
May 23 2010
ANC is 496 today. Anything under 500 raises concern.
May 24 2010
Haley is doing better today. Getting fluids and antibiotics. She is starting to eat some.
May 25, 2010
(Tuesday) ANC 165 They sent us home today to quarantine her. We decided to have her stay at her moms now as there are less people around to risk getting Haley something with her immune system so compromised.
May 26, 2010
(Wednesday) ANC 675
May 28, 2010
(Friday) ANC 100
May 30 2010
(Sunday) ANC 1100
May 31, 2010
June 1, 2010
Restarted ALK inhibitor. If Her ANC drops to or below 200, she will be disqualified from the trail. They are not allowed to give b-12 shots or anything that might mask the effects of the trial drug. Data first patient second. 12 days no treatment. This scares me on top of the 40 days no treatment just before we started the trial.
July 7, 2010
ANC 1083 Haley has gained 8 pounds. We are able to start the next 28 day cycle of pills.
July 12, 2010
July 19, 2010
July 24, 2010
Vomiting 4 times with stomach pain.
July 25, 2010
Vomiting 3 times with stomach pain.
July 26, 2010
ANC 2226 Admitted into Lebanon Hospital for dehydration. Gave her 4 bags of fluids July 27 2010 Haley is doing much better and was able to go home today.
July 29, 2010
Vomited one time
August 2, 2010
August 4 2010
****************** CAT scan and MRI (question in retrospect…were they clear?) Disease is stable. Received the next 28 day cycle of meds.
August 9, 2010
August 16, 2010
August 19, 2010
August 20, 2010
***************** Vomiting, severe headache (throbbing!!!) Shedding tears of pain.
August 23, 2010
August 26, 2010
August 27, 2010
Haley walked all around HaHa Tonka state park today. It is her and Cody’s one year anniversary.
August 30, 2010
Sept 1 2010
ANC 725 They withheld the trial drug again today. The nurse now tells me she just has to be over 750. So we have 14 days. This seems really odd to me. Why just the Neutrophils? They were 12. Range should be 44-80. We have yet to speak with Dr H since starting the trial.
Sept 2, 2010
Sept 4, 2010
Haley had a wonderful day wearing out Uncle Chris on the roller costars at Silver Dollar City. She is an animal on roller costars. She could be a fighter pilot.
Sept 8, 2010
Sept 9, 2010
Started back on the trial drug today. 9 days no treatment! Haley had a wonderful day at the zoo. Hippos were the favorite of the day. So glad you finally got to do something in St. Louis that was not gay Haley….
Sept 11, 2010
Took Haley to the ER in Lebanon with chest pain. Dr thinks its muscle spasms. X-ray looks fine. Happy 17th birthday Cassie!
Sept 13, 2010
Vomited once today. ANC 2550
Sept 14, 2010
Dry heaving and terrible headaches. Trip to ER Holding trial drug again.
Sept 16, 2010
Started back on trial drug ANC 5600 Sept 20, 2010 ANC 1300 Sept 23, 2010 ANC 1674 Sept 25, 2010 Vomited twice Sept 26, 2010 Vomited twice Sept 27 2010 ANC 726 Vomited twice, Throat and chest burning
Sept 28, 2010
Trip to ER, Vomited twice, fever 101.5, Chest X-Ray, Head CT scan looks good, getting fluids and antibiotics, ANC 6586 Sept 30, 2010 Trip back to ER, fever 101.5 bad headache, throat, chest burning. Oct 1, 2010 CT MRI scans Vomiting receiving fluids and Zofran.
Oct 4, 2010
Oct 6, 2010
Oct 7, 2010
Haley was pulled from the trial tonight. At 1st Jen (the nurse) they told me the disease was stable and everything was good. All we were waiting on was her labs. Her ANC was 3300. So while we were waiting (with possession of the trial drug) I asked about the brain scan because Haley has been having so many Headaches. Jen said everything was fine so no worries. About an hour later she brought me a print out of the report. She decided to take a look at it. It was unclear to her then what was going on (I think she knew) She admitted to not looking at the report on the brain scan. She went off a phone call from the radiation oncology. They told her disease was stable. So she gave us the next cycle and was ready to send us on our way. Jen called radiology back and asked them to clarify why they had not told her of the new mets, they said because they never report brain mets once the patient has had them already. So they told her stable. Had I not asked the question about the brain scan we would have been on our way home with the drug in hand. I would think this would be a good reason to have a Doctor in charge of the trial not a nurse. My concern now is did this same thing happen back in August? Were the mets already there back then? I asked that to Dr H who finally came in to see us and he said no, these were brand new. I don’t know if I should believe him. He said that without hesitation. I have a feeling they only looked at the recent scans and did not even think to look back to see if Jen made this same mistake back in August. I say this because Haley started complaining of her terrible headaches returning just days after her scans in August. Dr H said the trial drug was clearly not working for Haley anymore and that they were pulling her off the trial. I asked Dr Hayashi to inform Dr C and he said there is nothing anyone can do to keep her on the trial. I then explained that I wanted him to please just inform him. I’m going to send Dr C an email myself.
Oct 11, 2010
Oct 13, 2010
Dr C spoke with Pfizer and got things in the works for OK compassionate use. He spoke with Dr H and set him up with the tools he needs to get it done.
Oct 14, 2010
Went back to St Louis to discuss options. We are going to do whole brain radiation for 3 weeks then back on the trial drug. Dr Camidge must be very diplomatic as we had a very positive meeting today with Dr H. It was a breath of fresh air. We asked to speak with the social worker to see if we could get into the Ronald McDonald house during the three weeks of Radiation. There was no room. I asked in what situation does a patient get into the Ronald McDonald house. Here we are giving notice ahead of time and you already know there is no room? We have been at this for 2 years now and they have never had any room under any circumstances. We are going to see about doing it in Springfield instead. That way she can come home every night. We asked Kelly (the social worker) if we could get a wig as they are telling us Haley will for sure loose her hair with whole brain radiation. She said yes she could through National Children Cancer Society. Haley is relieved. We had her set it up for us to get one.
Oct 15, 2010
We are going to have the whole brain radiation done in Springfield so Haley can go home every night. Oct 22, 2010 We can’t wait until next week. Haley is hurting terribly. We rushed her to the ER in Springfield by ambulance. The radiation oncologist on call refused to do emergency radiation on Haley because she is a minor. Dr M called to speak with the radiation oncologist on call and he refuses to speak with him. He said there is nothing to discuss, she is under age and will not be treated at this hospital. They are now taking her to St. Louis by ambulance.
Oct 23, 2010
They scheduled Haley to start Radiation starting Monday. I insisted on them doing emergency radiation through the weekend, that was the whole reason behind not waiting until Monday in Springfield, she was in so much pain. They did come through and do her first of the three week treatments today.
Oct 24, 2010
I’m so angry. They did not schedule her for treatment today. Next treatment is tomorrow(Monday)
Oct 29, 2010
I asked Kelly (the social worker) how we were coming on Haley’s wig. She told me she did not order it. She said they never know if the kids want a wig or not and that some kids don’t. I was blown away! We told her back on the 14th we wanted one. She said it would take a couple of weeks now. This is exactly how long it has been since I asked her to get one. What’s odd to me is…at what point do they ask her what kind she is looking for or what size? I don’t think Kelly has any intention of getting Haley a wig. I went over to the adult hospital and spoke with the American Cancer Society. I explained to them that Haley was actually seen here at the adult hospital for a year and a half. I told them how she has all but lost her hair now from radiation. Could they help me obtain Haley a wig? They said they would be glad to if I could bring her down they would help and that they had many to choose from right there on hand. I went back to children’s and woke Haley up. I told her what they said. She was exited!!! They were so kind to my baby. She had a blast looking at all the wigs. She found the one she wanted on the third try. They did not charge us a thing, or have us fill out any lengthy forms. Now they are an organization worth giving to. Isn’t that a shame? You have this kind of help if you are an adult?
Nov 10, 2010
Today was the last of the radiation treatments. I’m so confused as to why we only did 14 treatments and not 15. They told me it was 14 treatments from the beginning. Just does not make since to me why things keep changing all the time. I think they thought we did it Sunday the 24th. Now they will not make it up.
Nov 20, 2010
WOW!!! I went over to see Haley today when I got done with the mail route. She yelled out the window at me to come here. She is full of spunk! She was excited to show me all the new clothes her and her mom just ordered. What a blessing today was for me. She asked me to sit by her and was very sweet. I almost forgot what it was like to see her feel good.
Nov 28, 2010
All at once Haley began doing much better than I could have expected. She had five days that were better than before she was dx. Saturday night Haley went out on her date. 10 am Sunday morning, Deanna found her face down in her vomit. She was unresponsive and her eyes were rolled back in her head. She called 911. They flew her to Springfield to stabilize her and then flew her to St Louis. So the EEG does not show signs of seizure. They said the scans do not show anything new that would explain her symptoms which include....loss of use of her right leg, no gag reflex at all, very slow to respond and only responds with nodding of her head mainly. A constant fever 99 to 101 with her baseline around 96. What I find odd is that they said they see no changes in the scans but in the same breath said that some of the tumors were larger. I asked them if that was a sign the tumors are not responding to the radiation. Would not the tumor enlargement cause some swelling and cause problems? They said it was a good question but they believe it is just a case of natural disease progression. What? They also said that the surgeon on call said that surgery was not an option. I asked about gamma knife to the tumors that are not responding...no answer. Of course I have not had an opportunity to speak with Dr H at all. They put us in with another infant baby again. When I asked them to find a room more suitable for a child with terrible headaches...they said they would sedate her tonight because they were sending Haley home tomorrow at noon anyway. That is odd....she still has a fever, she has not eaten or drank one single thing since we have arrived. They just pulled out the breathing tube and catheter today and now they already know when they are sending us home without communicating with us. So they sum it all up as progression of disease. I cannot even get them to do an MRI to have more information before a decision is made. Haley was scheduled to restart the ALK drug next Friday. They are supposed to be having a meeting to decide what to do. I do not trust them to exhaust all possibilities. They have proven time and time again to me that they are not willing to do that.
Dec 1, 2010
Dr B came over today to talk about a drug that was already approved that has had some success on treating mets on the brain. It was in pill form. Funny thing happened. Dr encountered a problem, Haley had long stopped listening to Doctors. She was a bit busy blowing kisses at Sylvester and Tweedy bird. In fact she had me go bring them in to hang with her for a bit and make fun of her father. The Doctor just closed the book and said maybe another time. Haley smiled and blew her a kiss. Crazy kid!
Dec 2, 2010
Haley was excited to tell me she finally got to see Dr H! I was down stair getting something to eat so I missed him. I made a smart elec remark that Haley did not like. She asked me to come over here and have a seat. She said, “Dad I know you are not happy with my doctors and you may be right, but I just don’t like to hear it. Please let it go dad.” I will never forget that conversation. It was the last one on one conversation we had. Deanna told Haley we approved them to start giving her the new drug. Haley smiled and shrugged her shoulders and said ok. As if to say whatever you want mom. (Found out later Haley had been saying her goodbyes….she knew. I think she did not say goodbye to Momma and I because she knew we could not handle it)
Dec 4, 2010
Haley went home to be with our Lord. She had a rough day but I’m shocked today was the day. She seemed to still have a lot of fight in her. 7:30 pm Haley looked up at me and said….DAD!!! I got to pee!!! I was very efficient in getting her to the bathroom with all the IV junk and cords plugged into the wall. When I picked her up to put her back in bed she cried out that her head was hurting so bad. I told her I would get pain meds as fast as I could. I ran out to get the nurse and insisted on them getting her something right away. They did. 7:45pm a doctor came in to check on her. I asked him if we could get a bed pan so Haley would not have to get out of bed to go pee. Or maybe a catheter. He said he was shocked she was able to get out of bed at all. Then he said something that pierced right through my heart…she is very sick you know, she will more than likely die before the night is over. I could not believe he said that right there in front of Haley! I sure hope she was asleep! I was also shocked and concerned…what if he was right? She died 9pm. We all held her as she took her last few breaths. Saying our goodbyes telling her how proud of her we are. I watched her heart beat in her neck. I could see it clearly pounding. The nurse said she was leaving us. I felt my heart break as I watched her heart beat slowing down. A part of us all died tonight..Life will never be the same without our Rose….We held her for hours before we were able to let her go.