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Feb 5.2010. We got Haley sploosh round #17 today. We also went to go see the pediatric pain management Dr. He was different to say the lease 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. Jan. 11 2010 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 Bragstrom 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 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 have sending her to a pain management Dr. Oct 28th 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 week. 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 head ach and anti nausea medicine through the iv. Also gave her a prescription to a cream that she can rub in since she can't hold anything down. Oct 26th 2009 Well Haley had her 13th round of sploosh Oct 23. 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 Baggstrom back from futurity leave. 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 isle at price cutter. As people began to stare I'm like Ya don't mind her she is out of school today because she is sick. Oh boy! She did stroll into school today like about 10am. I was so upset this morning, but you know what, I wouldn't have traded that time with Haley for nothing. Oct 13 th 2009 Dr. Wildes 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. We go next Friday Oct.23rd forchemo. The bad news is there isn’t really anything they can do about the pain she has, just pain pills. But we are glad that things looked good Sept 28th 2009 Dc. Wiles called today with the resoults 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. Sept. 25th 2009 Today was supposed to be sploosh day, but Dc Wiles 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 chemo at the same time so the Dc 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 24th 2009 Haley stayed home sick today. She is complaining of pain in her bones. More specifically the hips. Also of a sore throat. Sept 23rd 2009 We went to the Lebanon hospital today for the cat scans. 1st 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 18th 2009 I called Haley's nurse Tereasa today and informed her 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 xray. They were concernd for the possibilty 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 xray was all clear. No fluid build up or signs of pnuemonia. They gave her an anti imflammatory med. They said it was probably just referred pain . Sept 17th 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 14th 2009 It has been 9 months since the gamma knife treatment. Dr Manzer said the tumor is barley visible at all. And that there are no signs of any new ones trying to developed. What a relief this was to me. I just get so nervous at these things. During the CAT scan I was surprised that children's did not use the port to inject the die. A very confident nurse came to start the injection. I informed her that Haley had a port. She said that was fine, if I wanted her to she could go get the stuff to use the port if we wanted her to. Then she looked at Haley's veins and rather quickly stated that she felt there would be no problem. And she was right she did not hesitate. She had no problem hitting the vein the first time. I was impressed at her confidence level. Haley's next scan will be Dec. 14th. 12:10 At Childerns Hospital for Brain Scan And 1:30 with Dr Manzer At Jewish Barnes Sept 11th 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 cheak the stadus 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 Cassies Birthday. HAPPY SWEET 16!!! Sept 9th 2009 Haley is still sick today. She is getting real low on energy now after 6 days of being sick. She thew 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 8th 2009 Ok first entry since settled in our home. I will be on time Lord willing from here on. A brief over view of the last 6 plus months. The tumor that was found after the removal of the large tumor on the brain was at first detection 7cm in size. On March 30th it had shrunk 50%. And as of June 1st it had shrunk down to just a spot. So the Gamma knife was very effective. They will continue to scan the brain every 3 months. So we should get another scan this month. Haley took 6 rounds of Cisplatin and Alimta. Dc. Baggstrom said that normally they only administer four rounds , but because Haley's blood counts looked so good she wanted to press on a little farther with it. After round 6 she felt was time. Haley was starting to have more complications. So now Haley has been on what they call maintenance. This was something both Dr Baggstrom and St Jude thought would benefit her. She has had 6 rounds of Alitma. It is a Chemo drug just not near as hard on the liver and kidneys as Cisplatin. She was doing much better on it. She would only be sick maybe one to two days. However not the case with this last round. (will explain) Dr Baggstrom 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 chemo drug called ZOMETA would be beneficial to her. It is strictly to help the bones. The side effects are low grade fever. So on Aug 27th they gave Haley both Alitna and Zomet. She has been very sick for the last five days. Low grade fever keeps coming back and she has thrown up everyday. She is not happy. She has missed 4 days of school. Aug 14 2009 Today was the first day of sploosh with the new port. It did hurt her today. But she said it was better than 14 sticks. Dr. Braggstrom 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 coundn't tell She's all belly. Dr is a tiny asian lady. Aug 12 2009 Today was CT scan and surgery for the port. July 10 2009 Today was rough on Haley. They are having trouble hitting her veins. Ten rounds of Sploosh has taken a toll on her veins. They stuck her fourteen times today. They finally had some angel from childrens 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. What a warrior !!! Your daddy is so proud of you! Jan. 28th, 2009 I just got back today from taking Haley
to Chemo (Sploosh, new code name for Chemo because Haley HATES the word
Chemo)in St. Louis. 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. And I'm telling you she just got done receiving her
Sploosh . Up tell not the Sploosh ether made her super sick or
too tired to walk, and we were swimming! Jan. 13-16, 2009 Back to school!! She is so happy to be back 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. 9th 2009 Took Haley in for fluids today. She hasn't took on enough fluids again. It hasn't seemed to work as effective as before. Jan. 6, 2009 Haley had round two today with chemo. Everything went well. She was really tired. We met a nice young lady who was sent to us from the childrens 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.
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. Dec. 16, 2008 GOOD NEWS!!!!!! The 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. 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. 12, 2008 Today the MRI showed another tumor forming on the back of the brain in a lower spot already. Doc said it was aggressive. They now want to stop chemo and start radiation next week on the whole brain. 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 patatoe 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 quire perform tonight. Dec. 10, 2008 Haley has been a little better today.
She has drank one 16 ounce bottel of water. Eat half of a chocolate pudding. And has been eating sonic chopped ice. And some applesauce with suger.
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 a awsome 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 alot of advise to help us get through this part of chemo.
Also they helped me convince her that I was not the devil for tring to get her to eat and drink. Dec. 9, 2008 Haley has been taking has 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. 8, 2008 We took Haley to the pool today in atempt to get some exercise. She did have fun. But when we took her out to eat afterwords 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 every since. Dec. 5,2008 Haley had her 1st round of treatment today without any complications or sickness. Next round will be on Dec. 23rd Dec. 4, 2008 Dr. Bagstromm’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. 2, 2008 Met with Dr. Baggstrom – 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. Baggstrom 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. Bagstromm 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. Nov. 26, 2008 Had PET Scan, met with lung specialist (Dr. Patterson). Dr. Patterson 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 Hoaughy (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. Shinoy needed to discuss with the adult Onocologist, Dr. Baggstrom 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 Baggstrom would be the treating physician. Appointment was made for Dec. 2 and would not consider an earlier appointment due to the holiday. Nov. 25, 2008 The hospital called and made an appointment for Wednesday to do a full body P.E.T. scan. Nov. 24, 2008 Follow-up with Dr Smith (Neurosurgeon) – released to go back to school and to drive. Ok to get exercise. Nov. 18, 2008 Today Dr.Hoaghy (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. 14, 2008 Haley got to see the children’s Onocologist , Dr. Shinoy 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 build up 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. 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. 10, 2008 The hospital called us to make an appointment Friday for another CT scan, MRI, and ultrasound of the thyroid. 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. 07, 2008 Haley gets to go home today. Nov.06, 2008 Dr. Smith 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. 05, 2008 Surgery went really good for Haley. Dr. Smith said he was confident he removed all of the tumor. Nov. 04, 2008 They found a tumor on the back of her brain about the size of a large egg. Dr.Smith Said that 90% of brain tumors in children are benign. Surgery is scheduled for tomorrow to remove the tumor. Nov. 03, 2008 Haley has been having terrible head aches 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.
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Treatment Update's