|
|
04/08/2004 |
|
| I know it's been awhile ... but when the computer doesn't work communication seems to come to an end quickly. I have our new one in our house and it is hooked up but I haven't loaded everything on it yet.
Last Thursday (a week ago today) Hannah was admitted for her second round of VAC (chemo). She was under the weather a little but her counts were good so Dr. Chu decided it was ok. Before Dr. Kelly left for vacation he ordered a urine test to be done before coming up for the second VAC. I was so disappointed to find there was blood once again in her urine. We're pretty sure the first round of VAC that she had 3 weeks ago is what caused it. This is the first time since before her surgeries last November that she has had all three drugs at one time ... and they were reduced by 25%.
Dr. Kelly and I were so happy that after her first week of having the VAC she wasn't admitted and never had any complications and didn't become Neutrapenic. Guess we spoke too soon though.
Last Thursday because of the blood in her urine Dr. Chu was reluctant to give her the VAC for the second time. She has so much damage to her bladder and the chemicals from the Cytoxan only continues to damage it more. We were really hoping with the 25% reduction she would be able to tolerate it without further damage to the bladder. After a full day of mulling it over Dr. Chu decided to go ahead and admit her for the VAC with a catheter! He had already left for the day when I got the information. Of course for Hannah to have a catheter is shear torture. It took a team of nurses a dozen pokes before they figured out where to put it! She screamed and screamed and cried and cried and begged me to take her home and wait for Dr. Kelly to get back. She knows Dr. Kelly never allows the use of a catheter because of the high risk of infection. The point of the catheter is to stop the drugs from even sitting in her bladder ... he wants them right in and out immediately. That's a wonderful idea and one that her kidney doctor suggested last Fall too ... however, Dr. Kelly vetoed it because of the high risk of infection.
We went home last Friday evening with 48 hours of fluids. That in itself is such a chore! What a little trooper she is though ... never complained once. I felt so sorry for her when she woke up Friday morning vomiting ... and didn't quit for 3 days! With all the chemo she's had she's never once gotten sick with vomiting. Then on top of that she started the diarrhea...and is still battling it ... even with adult doses of Immodium D and those doses are DOUBLED! She eats and drinks very little and I've been watching for signs of dehydration, but so far she's been holding her on. She started coughing and complaining of headaches on Monday morning. I kept her home and watched her close but she wash hanging in there. She started running a low grade temperature on Wednesday afternoon and around midnight that night she spiked to 102. I called Dr. Chu and he said to give her Tylenol and if that didn't bring the temperature down to bring her in. Since Tylenol works wonders for her she got to stay home until this morning when we came to the Costas Center.
She was admitted this morning with a fever of 101 and for being Neutrapenic. She is snow white and her white blood count is 0.2 (which is awful). She will get a transfusion in the morning of red blood but until her platelets drop down to under 25 she won't get platelets. This morning her platelet count was 55. Normally she runs is the 200 - 300 range. The VAC clearly is much too hard on her little body. I'm anxious for Dr. Kelly to come back so we can decide what to do next.
We are supposed to have a CT Scan next week but since we're here for a while I'm hoping they will just go ahead and do one while were here. We have to pray this CT Scan will show the rest of the tumor (they weren't able to get out in November) to be completely gone.
Right now they are culturing her blood and urine trying to find out where her infection is coming from ... as soon as they know they can prescribe the antibiotic specifically for that type of bacteria. She is getting a generic antibiotic that covers many overall infections. Dr. Chu also heard some rattling in her left lower lobe of her lung and sent us for a chest x-ray. He told me it looked "ok" to him and would wait till we get a final report from radiology. So we need to build her back up and the best place to get that kind of support is right here ... I know Dr. Chu really wants us to be home by Easter ... if not Hannah and I have decided we will hide eggs all over 4 North! She even said she would ask her dad to go by the bank and get a whole bunch of change to put in the plastic eggs. Then she said we would need about 400 plastic eggs to hide and I thought to myself Oh Boy!
I will keep you posted as things progress.
Love Cindi and Hannah
|
|
|
04/09/2004 |
|
| Hannah continued to have severe diarrhea all night and again today as well. She isn't eating or drinking anything so she's receiving lot's of IV fluids.
This morning Dr. Chu decided to culture her stool (checking for CDIF again) but when Dr. Gale took over he decided against it. Hannah has a history of CDIF and it is extremely difficult to get rid of. They're giving her lot's of antibiotic's. Her upper respiratory symptoms are disappearing but she still continues to run a fever.
She's hanging in there like the trooper she is though ... never complaining. She'd really like to be home for Easter but we're still not sure.
Take Care ... Cindi and Hannah
|
|
|
04/11/2004 |
|
| Dr. Gale let us go home late this afternoon. Her white blood count was only up from 0.2 to 0.6 and her red blood count only went up from 7.7 to 8.2 (after the transfusion) and her platelets have dropped to 55 (but not under 25 ... which is the transfusion number).
She has to go back Monday morning for another blood work up and hopefully they will be good enough that we won't have to stay!
She has perked up so much since she's been home ... except now her hands are real cold ... which is a sign she needs more red blood. At least she's eating good though. When she went in the hospital I was shocked she had lost 5 pounds! Then she lost another 2 while in the hospital. Today she has ate like a little pig though. She's really enjoyed Easter too. Sissy came over and went to church with her and spent the day having dinner and hunting eggs. They spent the afternoon making bead key chains.
This Easter she got lot's of Easter baskets and bunny rabbits. Her friend Paige brought her up a stuffed animal that plays music and dances to the dance from the "Chicken Dance" when you push it's hand ... we've all had a ball with that!
Will keep you posted. I've gotten lot's of e-mails that I need to answer since getting my computer hooked up ... I promise I'll get to them eventually.
Happy Easter!
|
|
|
04/17/2004 |
|
| Hello,
Hannah's been doing well ... she still complains of headaches and a sore throat but overall she's doing good.
Tuesday she will have the CT Scan that we all are pretty anxious about. It will tell us whether the radiation and additional chemo therapy has shrunk the remaining 10% that they didn't get in the first two surgeries.
I'll keep you posted.
Cindi
|
|
|
04/26/2004 |
|
| Tomorrow Hannah will be admitted for Chemo. I'm not sure at this point what type or for how long.
We are having a consultation with Dr. Kelly tomorrow morning to review her CT Scan and to discuss where to go from here.
I do have the CT Scan results but I prefer to wait to share them with anyone until after our consultation. Hannah is also scheduled to have a IBP test tomorrow morning. This test will evaulation her kidney function.
Her attitude and spirits are high as they always are. She's been eating like a little pig (thanks to Grandpa) and even gained back 5 of the 7 pounds she lost from being sick the last time.
I'll let you know how the consultation goes tomorrow some time.
Cindi
|
|
|
04/27/2004 |
|
| What a long consultation today...it lasted well over two hours. I had asked Dr. Kelly to pull this recent CT Scan so we could compare it to all the prior ones. We reviewed them all and as hard as it was to figure out what the gray, white and black areas were I think we finally did.
We clearly seen the tumor on this recent scan ... as ugly and upsetting as it was. With the three months that has passed since radiation and the additional chemo she's received we were really hoping the mass would be gone ... we are very disappointed. It has not grown in size at all though, which is great news according to Dr. Kelly.
The CT Scan also showed us there are two pockets of fluid (caused from the surgery) which should subside sometime within 3 to 6 months. The results showed the contrast going through all the organs until it came to the end of the right ureter and once again it just appeared to be "lost". They did check for urine leaks into the belly and found it to be alright. We don't know if the fluid pockets are covering the ureter or if the ureter is just going into the bladder ... and wouldn't look right because some of it has already been cut off. Her GU is reviewing the results with the Radiologist and I should hear something soon.
The issue now is to come to a decision about whether to try and remove what is left of the tumor or watch and wait and see. Both are very risky. What is there now could certainly be dead and for whatever reason the body just hasn't absorbed it. This is not uncommon according to Dr. Kelly. However, there are many vessels and veins that run throughout the body which could still be trying to feed the tumor and when she is finished with chemo could begin to grow again.
As an Oncologist, leaving the mass makes him very uncomfortable ... you never know when it could raise it's ugly head again. The alternate is surgery. This time surgery would be considered "radical". Terry and I were shocked to hear Dr. Kelly tell us that it would be difficult to even find a surgeon who would be willing to go in and do another surgery on her. He told us that the main artery would have to be severed and repaired and rerouted ... this is the extremely risky surgery that I talked about in the beginning. The vascular surgeons would be called in. Damage to the bladder would be very likely and she would certainly loose the right ureter. There would be concern as far as the right kidney is concerned but how much at this point we don't know.
They would try and do a biopsy before making any definite decisions about anything. However, the biopsy is very risky due to the risk of hitting the main artery. This would have to be done while in a CT Scan by a Intravenous Radiologist.
Last week I done some asking around about another way of finding out if the mass was dead or alive and another Oncologist suggested a Pet Scan. This scan tells us if the mass is "hot" or not. However, after looking at her CT Scan today there is tremendous amounts of inflammation every where she was radiated. Dr. Kelly showed us where the bowels were hit the hardest ... but Hannah has not been symptomatic as of yet. Unfortunately, a Pet Scan will not be able to differentiate between inflammation and tumor.
Dr. Kelly stressed that every one has their own opinions on how to proceed with Hannah's care at this point. His opinion is he can not risk leaving the tumor. He told us to be able to assure us she has a chance of beating this cancer by keeping it localized she would have to have it removed.
Of course we haven't had any discussions with surgeons yet either. Second opinions are certainly in order at this time and I will be getting busy working on that.
Dr. Kelly was full of surprises today ... he told us after this round of Chemo she would only have to be subjected to two more rounds and she would be done. Unless the biopsy and or surgery would prove that the tumor was alive ... then she would need more.
I was very surprised about the chemo treatment, he had told me a month or so ago that we weren't even halfway done. I think I'm going to ask him to double check it.
Lot's of new information for us to process today. Very disappointing news too, but when I think of these other three children here that we've gotten to know I realize things could be so much worse for our Hannah.
There is little 3 year old MacKenzie who just underwent surgery last Friday to remove her Rhabdomyosarcoma tumor from her chin, neck and face and who was grossly disfigured in the process ... and she can not have radiation as a second means of killing this tumor. Her tumor has not metastasized. She was diagnosed at a Stage 3 with Embroynal Rhabdo.
Then there is a beautiful 15 year girl named Jessica who was diagnosed two years ago with Alveolar Rhabdomyosarcoma in her right arm. This type of Rhabdo is the absolute worse ... especially when you have a initial diagnoses of Stage 4. Her chances are slim that she will win this battle. There is concern as we speak that it is now in her lymph nodes and now that are radiating her left arm.
Then there is a little 6 year boy who was diagnosed with Embroynal Rhabdomyosarcoma Stage 3 two years ago and it was thought he had overcome his cancer. Six months ago a side effect of treating his Rhabdo was that he now had a new battle with Leukemia. There is only a 5% chance that these kids under going treatment will as a side effect come down with another type of cancer and Johnny did. While undergoing his bone marrow transplant for Leukemia he relapsed and his Rhabdo came back with a vengeance Johnny and his mother are still fighting this disease and refuse to give up.
When Hannah was diagnosed she was at a Stage 3 and a half. Her diagnosis was Embroynal Rhabdomyosarcoma and it had not spread anywhere else in her body. Thank God she was able to have radical radiation because without it her chances would have been cut back considerably of beating this cancer.
It could be that Hannah could have been a Stage 4 and instead of Embroynal Rhabdo she could have been diagnosed with Alveolar Rhabdo. She could have had it in a place where the possibility of radiation would have been impossible.
Yes, we are going through living hell battling this cancer but Hannah and I have to only look around to see that there are other children far worse off than her. We thank God everyday for giving us at least a fighting chance at beating this cancer. The war is on but the battle hasn't been won yet. With your help and prayers we stand a much better chance than most.
I will keep you updated as I find out more information.
Love, Cindi and Hannah
Gotta Run ... See Ya ... Have a Great Day!
|
