We have a date

Terry is now scheduled to go into the hospital January 5th. In the meantime the doctors are watching her blood counts and adjusting medication. This last week her platelets were still really high so they increased her medication quite a bit. Her hemoglobin is decent (9.1 this week) but the doctor said he would like her to go in for a transfusion if it drops below 9. He wants her feeling really good before the transplant process starts. She will go back the beginning of this week to have her blood checked again. Thanks for all your prayers and Merry Christmas!!

It now looks like the transplant will be after Christmas sometime. The donor's procedure had to be rescheduled after the doctor decided to postpone everything because of Terry's leg (which is now doing much better) so we are waiting for the coordinator to give us a new date. It will be nice to be able to spend the holidays with family but at the same time Terry is getting a little anxious to just get it over with. We'll let you know when we hear more.

Updates

It doesn't look like Terry will be starting this week- last Wed she went to S.F. for a few preliminary tests- lung function and echo as well as some others I think. Her leg has been hurting and her knee was swollen, her doctor thought it might be a blood clot so she also had to have an ultrasound done on her leg- luckily there was no clot but it looks like the procedure will be postponed for a week or so. Her platelets are high and that puts her at an increased risk of having a clot. We also learned that the donor is a 27 year old male and after a year she may have the option to meet him. There was a lot of information to absorb, including that she will not be able to be around any children under 12 years of age until at least May :(

We had a great Thanksgiving- lots of good food and family. We'll keep you updated as we know more, when Terry is admitted and about the procedures. Thanks for your prayers!

Everything seems to be moving so quickly now! Terry seems to be recovered from the last surgeries and has been busy getting things ready for the next step. Her hemoglobin counts have been really good, she looks great and feels good. The spleen seems to have been part of the issue with the low red blood cells.

We now know she will be checking into the hospital on December 2.....that is next Tuesday!! So for the rest of the week we will be celebrating Thanksgiving with friends and family, getting ready for the long road ahead. We will be sure to keep everyone updated throughout the process. Thanks for all your prayers.

Terry is getting stronger everyday! She is walking around the oak tree and doing the exercises the physical therapist assigned. Yesterday she had an appointment with her doctors at UCSF and things are moving along quickly. Terry's hemoglobin was 10.2 (higher than it has been lately before the spleen removal) but her white cells and platelets were really high so the doctors want to move on to the next step. The current plan is to check into the hospital the week following Thanksgiving to start the chemo she will have to undergo before the transplant. The donor is scheduled to begin their process December 8th!!

Terry is being so strong- she says she is a little nervous but that is understandable!! We are so proud of her and grateful that she is not one to give up. Thanks for your prayers and support. We will update again soon!

Back Home

Terry is back at home again! She finished the IV course of antibiotics and is on her way to getting better. Let's hope this is the last hospital stay for a while. Thanks for your thoughts and prayers, we'll keep you posted on her progress

Back to the hospital....

Well everyone made it home, but today Terry had a lot of pain along her arm and it was red and inflamed- turns out it is infected :( She is now in the hospital in Fresno getting IV antibiotics until the infection starts to clear up- hopefully only a day or 2. There was also a lot of drainage coming from her incision site, however the doctors feel that that is not a problem right now. I'll keep you updated as we learn more.

Discharged!!!

Yeah! Terry was released from the hospital today. She is staying in S.F. for a little while then will make the long drive home. She is still feeling very tired and a little weak. The doctors want to begin the transplant process in 6 to 8 weeks- so keep the prayers going!

Quick update

The catheter and IVs are out!! Terry walked around the floor today- got a little tired, but she is making great progress. We can't wait to have her home!!

Out of ICU!!!

Terry moved into a regular room yesterday afternoon. The doctors are pleased with her progress, she was able to eat solid food this morning and things are looking better. We'll continue to update on her progress and keep you posted on the transplant plans.

We wanted to include links on how to donate blood and other blood products (platelets and plasma) called apheresis since Terry's recovery has depended so much on help from the blood bank and all of those who have donated. We are so grateful for these donations.
Info on whole blood donation: https://www.givelife.org/index_flash.cfm?thisHB=10/13/2008%2012:06:26
Info on apheresis:
http://www.givelife2.org/donor/apheresis.asp

I also put a link to the National Marrow Donor Program on the right, which has information on signing up to be a bone marrow donor.

On Her Way to Recovery!

Last night Terry ate some broth and pudding!! Today the kidney specialist said he thought that the blood levels that were indicating kidney dysfunction may have reached their plateau and might be decreasing over the next 24 to 48 hours. If the levels do come down then she will not need dialysis-let's hope they come down! He anticipated her being out of the ICU in a day or 2. The surgeon also said that she looks to be doing good- the fluids coming from the drains they inserted look much better than before and depending on her kidneys she may be able to go home at the end of the week!

Today Terry is more awake and responsive. Her blood counts look pretty good. The doctors are still evaluating the condition of her kidneys which are functioning better but there is some room for improvement. They are considering a course of dialysis but not sure if that will be necessary. She may be released from the ICU to another room tomorrow. She sat up in a chair for a short while this morning and is going to again this afternoon. We can't wait to have her home again!!! Thank you for all of your thoughts and prayers, we hope to update you with more good news soon!

out of surgery!

Terrry is out of surgery. Yay!! Things look good so far, her kidneys appear to be functioning better now that they have removed the blood from her abdomen. They did not find any active source of bleeding. She'll be in the ICU through at least the weekend. More updates to come.

Waiting.....

Terry's blood counts have dropped some so she has been given more blood and now we are waiting to see how she responds. Since her last transfusion her blood count has come up a little, but still not enough. If her levels stabilize (next blood draw is 10 p.m.- and it takes about an hour to get results) then they will take her back into surgery tomorrow to clean up the bleeding. If her count continues to drop more tonight then they will be taking her into the operating room right away. An ultrasound of her liver was done today and looks healthy. This morning her urine output dropped and has been down throughout the day, this causes some concern that her kidneys are not functioning properly- we are still waiting for results on these tests. Please continue to check back regularly- we'll do our best to keep it updated.

Things are looking a little better now. The breathing tube was taken out today and she was able to talk some. She is still in the ICU and being monitored closely. We'll continue to send updates when possible. Thanks again for all of your prayers, it means a lot to Terry and the family.

Officially Spleenless...

What a long day. The surgery itself took about 9 hours. They were able to remove it laprascopically with a relatively small incision. The surgeon said this is the biggest spleen she has ever seen and estimated it weighed about 20 pounds! There have been some concerns with some of the blood tests after surgery; she has received some blood transfusions and plasma with clotting factors and vitamin K to reduce the bleeding. They are currently keeping her intubated and heavily sedated in the ICU. I'll continue to give updates when I am near a computer.

Currently in surgery...

The embolization procedure to shrink the spleen was performed yesterday afternoon and from what we can tell, the spleen is smaller. Hopefully this will make today's surgery easier. Terry was in a lot of pain through the night despite the medication she was given and by this morning she was looking forward to having the surgery over with. At 9:30 this morning the surgery began, they are expecting it to be 6 hours or longer and then a few more hours in recovery- we'll update everyone again tonight. Thanks again for your prayers.

We spent the weekend visiting and preparing for the first hospital stay. Terry is now tech savvy with her new ipod loaded with music, games and a few movies.

On Tuesday the process will begin. A procedure will be performed to cut off the blood supply to the spleen, which will hopefully shrink it in size (see picture below) and make the removal easier. The surgeon is hopeful that the surgery will be done laprascopically. The actual surgery will take place on Wednesday, we will keep everyone posted as we learn more.

We decided to include a before picture to show you how large Terry's spleen actually is- so here it is:

You can see this will not be an easy process. Your thoughts and prayers mean so much to our family.

A little history....

Eleven years ago Terry was diagnosed with myelofibrosis, a very rare condition where the bone marrow does not function normally. Here is a link to a description of the condition: http://www.mayoclinic.com/health/myelofibrosis/DS00886. Over the past year her condition has progressed significantly to where she has lost 40 pounds and her spleen has increased dramatically. One doctor stated that her spleen was the size of a football. Thankfully she has had the strength to laugh at the situation with pregnant jokes!

After weighing the benefits and risks the family has decided to move on with a bone marrow transplant, the only chance for a cure. The procedure itself is a very risky and long process. It will require months in the hospital followed by many more months of close monitoring near the hospital and a detailed medication regimen the rest of her life.

The first step which we are beginning this week is removing the spleen. The doctors state that they would not recommend this if she was not going through with the transplant. Terry will be getting the best care at UCSF, however there has never been a case like this one. The surgeon, who is supposed to be one of the best said that this will be a challenge, but she likes a challenge.

We are very grateful for everyone who has been praying thus far and thank you for continuing to pray as we start the next step in this journey.