Day+8 Mom Escapes

Today Owen came up early to let me go home for the night. First time I have left the hospital! I picked up the girls from school to hear lots of hooting and hollering. We had an early dinner at Applebees with 2 of my friends and then off to shop. Too much TV watching had Quinn finding a few things he wanted. Well, he got his wish list!

Next day I had errands to run and kept the girls out of school because they begged and pleaded with me.

When I got here I noticed that Quinn was breaking out in a rash. Which is one the signs of engraphment. Unfortunately, it hasnt happened yet. The doctor said that he would give him 30+ days before he did a Bone Aspiration and consider another Transplant. We have 2 Umbilical cords. Our first choice was a 5/6 match and the second is a 4/6. The research that I found on the internet from the 1960's of the 3 cases of BMT were sibling donors. The engraphment times were 13 * 14 days on one and 19*20 on the other. So, I sure do hope that this happens soon. I would hate to see my boy go thru all of this again! He has been such a trooper and SO SO strong. Much better than I would have ever done. He is ready to get out of his room. Unfortunately, he cant do that either due to the fever he has. No reasons that they can find. So is assumed that it is part of the engraphment phase. God be with us us here!!! Momma is weak and losing her patience. I am sure you are trying to teach me a valuable lesson. Just waiting to see what it is.

Day +5

Quinn has had another great day. He has been out of the room most of the day except for this nmorning. He has been in the playroom watching several movies including Harry Potter. Today I was able to go check out some movies for him. I hope he likes my choices. They have 2 areas to our floor. One for the cancer patients and one for the Bone Marrow Transplant patients. So, he isnt able to leave the floor due to bacteria that may be laying somewhere. Our room keeper is Maria and she does such a good job!

This morning we received news that his white count showed up a bit and is at 0.11. Not much of a count bus it is something. The doctor told me not to get too excited because the counts dont usually show up until days 7-9 on cord blood donors. So, if it isnt there tomorrow then I wont be disappointed ... will just be something that is to come!! But, would love to see something.

Today he received a unit of blood. No platelets as his counts were good.

Have a great weekend everyone --- Auntie Lorrie Happy 50th!!!! We will be thinking of you please.

Day +4

Today Quinn has a great day...he was up and out of the bed many times, played in the playroom and sat in the big chair. Keeping those big muscles of his in good shape.

He doesnt feel like eating alot at this point but has food suppliment connected to his Hickman line.

Today I shaved the remaining pieces of his hair. He gave me the word that he was ready. He looks so adorable!!!!

Things seem to be going along well and I will leave it at that so nothing comes up to bight us in the beind. The docs are pleased with his progress as well.

Day +3 Nightmare on Elm Street

We have had a rough day. Quinn is doing ok. He is resting alot so that the transplant can be successful. Last night he had a horrible nose bleed - actually 2 of them. Luckily I had my nosebleed bag and was able to help him out. He received a unit of platelets and also a unit of blood. He is taking quite a few medications for the moment, which is not uncommon at all after a transplant. Most recently, they discovered that he had an infection in his blood stream. Which they are successfully treating. So we will remainon the antiobiotics for a total of 10 days just to make sure. Good News is that he hasnt ran a fever since they started the meds. So,it must be the correct meds.

Unfortunately, the doctors that we work with are specialists in the Bone Marrow Transplant area and not so much in the Glanzmanns Thrombasthenia area. Last night we had a "Fellow" on call while Quinn had his nosebleed. That caused alot of turmoil and she had no idea what to do and then tried to think of ways to take care of him. None were successful. And she refused to listen to me. I am not a doctor by any stretch of the means but do know alot about Glanzmann's Thrombasthenia and what works and doesnt work for my son! I felt like I was living on Elm Street or something. I am trying to be patient and wait until the main doctor comes in so that I can speak to him. There will have to be a few ground rules set. I love my son dearly and refuse for him to receive care that isnt acceptable.

It will be another 1 week or so before we will start seeing the new cells creap into his counts. Since they were cells from an umbilical cord, they have to stay inside the bone marrow to grow. This is called "Engraphing". I am anxious for that day to arrive.

Quinn received a new haircut today. After all of the Chemo that he had, he lost the majority of his hair. I had brought my clippers with me just in case. He wanted to keep his longer hair but unfortunately, that didnt work out so well. BTW, he looks adorable and his beautiful almond eyes just stand out!! The ladies will be going crazy over him!

Hoping tomorrow goes much smoother than today! Everyone say prayers and cross your fingers.

Day +1

Today was a resting period for Quinn. He slept most of the day and evening. We Watched his blood presssure, fever, headache and heart rate closely throughout the night. He seems to be much better today. He got alot more sleep than his mother.

Quinns sisters are anxious to see him but we felt that it was better for him to rest. A few things concerning came back on his labs. But all is ok.

Renner Roadrunners we thank you greatly for all of the words of inspiration and caring that you have shown Quinn! He needs support at this time.

Transplant Day 0

Today was the big day for Quinn - a day he has been waiting for a long time. The big event happened around 12:45 or so. Such a small bag of cells with alot of power in it. I have great pictures of the event. I haveto admit it was both scary and exciting at the same time.

He did not have a reaction to the cells except for a horrible headache. The headache became so much he vomited and couldnt stand. Then the blood pressure shot way up as well as the heart rate. I thougt I felt a fever coming on but went away. About an hour it came on at 102% something. He was given meds to assist with the blood pressure, headache and fever. Quinn has slept since afternoon and still continues to sleep.

I am glad that the day is almost over but will be glad to see tomorrow come!

Day #10

Today was a free day. Quinn's sisters came up along with Cousin Kel, Auntie Aron and his Papa and Dad. The kids played in the game room several times shooting hoops and playing game. Too much fun. Quinn was especially excited to show Papa how he could shoot hoops.

Quinn ate well and is excited for tomorrow to arrive.

Day #9

It seems like the time is passing quickly so Quinn says. He finished his chemo this morning at 2am. So,we have had a relatively free day. Alexandra and Alice Jane came up this morning to see him and stayed until later afternoon. The kids got to watch a movie and play in the playroom. It was nice to see them all together. Quinn was certainly excited. Tomorrow is another free day of rest. I believe his sisters will be able to come back tomorrow.

Quinn has developed those nasty sores in his mouth from the chemo. So far, he is tolerating them very well. He is a trooper and not complaining much at all.

Monday is the Bone Marrow Transplant. Actually, it wont be like a surgery at all. They will hang the donors cellls and put them into his body via a central line. The baby cells they tell me are pretty "Stupid" and dont know what to do so they hang out in the marrow until they mature a bit. Then they start c0ming out and his counts will start going up. Hopefully, this will take care of his rare bleeding disorder. So far, he has had a bloody nose and lost a tooth. Nothing major at all. I was so excited that I jumped up and down!

Quinn's Papa and Aunt are coming tomorrowto see him. He has talked about that alot!

Thank you to all that have made comments, Quinn loves them and is so excited toreceive them!

Day #8

We are almost through all of the Chemo!!! Yeah! Quinn has handled it beautifully. I am so proud of him. Not sure I could be as tough as he has been. Very brave little man!

Today he has slept about 90% of his day. He met with the teacher and did a little homework, took a bath and ate 2 meals and of course was woke up many times by the nurse. But managed to go back to sleep.

I have caught up a few things that I needed to do and went for a few walks inside the hospital. Was nice to see a different part of the hospital for a change.

Monday we are all set for the Bone Marrow Transplant! He is ready to move on and so am I. There is alot to learn yet. I learned glanzmanns and am sure that I can learn this too. Just need some time and info.

Days 6&7

Chemo time seems to be flying fast and Quinn is doing so well on it. He has lost some hair but not enough to notice a difference. He has only been sick 2 days in all. Which is outstanding in my book. Today they doctors feel that he is at the end of of Glanzmans and will be ready for the transplant on Monday. The old Platelets were so weak and work out that it didnt take much for them to go. He has new donor platelets on board. At this time, they have decided not to give him any more platelets unless needed. The good news is that since he has a new system the Antiobodies to the platets is gone!!!! Yes, Gone!!!!! That is great news. Our last chemo day is Saturday. The chemo that he is taking now is specific for Bone Marrow Patients to prepare the body for the transplant. Next week he will have a complete turn from what he has now. He will probably be in alot of pain and on pain pills most of the time. My poor baby!!!! I sure wish i could do this for him. Once he has completed the transplant we will continue to see the doctors for 1 year. At that time the new system should be in tact and all ready to go!!! I can hardly wait! Hopefully, this will be a memory of the past very soon. It is so hard to see your child suffer or go through any of this.

Aunt Tammy came up for a few hours today. I stayed close to the hospital just in case there was a nose bleeding episode. Not quite trusting yet. It will take a while.

Thanks 5th grade class for allowing "The Monkey In My Seat" to join your classroom! You will have so much fun with it. Quinn is sleeping with his everynight and thinking of you all! :)

Day #5

What a cruddy day lot of snow. Quinn opened the day with a massive bloody nose. He is now sleeping finally and the bleeding is slowing up. I have been caring for his bleeds succussfully for several. And these docs are treating it like a minor bleed and wont listen to me. When he bleeds he needs to be medicated and packed immediately. After filling up 2 large bowls they had to check to out to see if I could really do it. Immeciately, I got permission to use my own packing and to pack it right away. My voice was heard this morning. Will see. A bit ticked that the hematologist is now involved again. She has ordered Factor VII for Quinn along with the platelets. That is totally not necessary. The platelets should be all that is needed along with the packing. The hospital charges $60k for a unit of Factor. She is on her last leg with me. Well thismorning I was quite miffed with her. I tried to fire her several months ago and shepromised all this and that .... shemay get fired yet. I guess I am just a xxxxxxx. Don't care!!!!!

The girls and Owen camefor a minutes tonight. As always nice to see them but hate hate hate to see them go!!!! School was out today due to a snow day so they stayed with cousin Kelly and had a ball!

Tomorrow we start a new chemo - Busulfin. Seems like the ATG Rabbit has been very hard on his sleeping pattern. He is sucha trooper and told me tonight "Momma I am sure glad we had this one Marrow Transplant" So he super great attitude which I am forever thankful for.

Day #4

Well,we have made it to day #4 so far. Quinn is such a champ and handling the fever, multiple chemos and sleeplessness along with nausea and vomiting. He just takes it in stride and goes with whatever comes along. Very proud of him! One more day on this hard chemo and we move forward to another. The next chemois known to cause seizures. Not looking forward to that at all.

The girls are having a hard time as well as I. However they are happy to see each other. The girls were up both Friday and Saturday night,

Well, they are calling us for bath to get the bacteria off of him. Fun Fun!

After getting out of the bath, he got sick to his stomach and developed a bloody nose. Luckily, it wasnt too bad. Unfortunately, they will not let me pack his nose or anything. Platelets were ordered stat. So, in the meantime I have an angry boy becuase I cant pack his nose! He told the nurse that this was a really crappy policy to just let him bleed !!!! I couldnt agree more. The chemo will have to be stopped while the platelets are going in. So, it will be a late night finishing up chemo tonight.

Day

Day #2

Today a second chemo was added for Quinn. He developed a high fever and developed nause and some vomiting.

Later in the evening, his sisters came to visit him. They miss us terribly. Poor little Alex is having a hard time without her brother. For some little girl who wasnt so sure about having a brother in the beginning ...... Heck, they are like mut and Jeff tied to the hip. I felt so sorry for her,s he stood at the door telling him goodbye and I love you! Tears were about to roller down her sweet little face. Quinn looked at her and said "I Love You Too Alex". Those words for Quinn are hard to come by .... So, it was a true blessing to hear him tell her! He even admitted that he missed her and Janie!

Janie has been busy taking pictures of my kitty cats with her IPOD. I must say, she is quite the photographer. The pictures of a few of them are picture perfect!

Today is the Day!!!!

We made it early this morning to Hem/Onc and were held up due to the Hives from the platelets. So with that, we were late getting to Same Day Surgery to get his Hickman put in. It was 3:15 before we got out of there and then had to get to the room. I had 2 wagon loads of stuff to bring up to the 4th floor. I didnt think I was every gonna get done with that. Quinn mentioned he was hungry. He had 8 orders of tater tots!!!!! and a sprite. Wow!!!!

All went pretty well for the most part. He did have some bleeding after the line was put in but nothing unexpected. His platelet count dropped to 6.1. We are waiting for them to come to the floor to be administered.

My Janie is tore apart and can hardly understand her when she calls because she is crying so hard. Poor Baby! Alex is upset but is able to contain herself. Now, they have me looking like Rudolph the Red Nosed Reindeer.

Tomorrow bright and early at 8am the Chemo begins. It will run in 4 hour incrimentsover 16 hours a day .... everyday until transplant! Poor Baby!

Almost There!!

Sorry it has been so long since I last posted. It has been busy and we have had alot of bleeding since my last post; along with a couple of visits to the hospital for platelets. He seems to be so much worse over the past few months and the blood runs like water out of his little nose. With that comes a quick drop of the Hemaglobin. Very scary stuff when that happens.

We made it through of our Pre Examinations for the Transplant. He was not happy with the 24 hour Urine Collection test that had to be done since we had to do it twice. Looks like everything is ready to go along with the approval from the Insurance Company. Everything except me that is. I have so many things to get ready before I go.

Both girls are having a very hard time with me leaving them. They have been fighting alot this week. Finally, when I talked to Alex about it she just broke down and then came Janie right behind. They are both a mess about the separation. We had a talk about family and what it means and how this will be so awesome once Quinn is home and feeling better. They were pleased at the thought of a girls day without their brother and how he could go fishing with his Papa and Daddy without Mom being right behind them. Quinn is so excited at the idea of going to Papas farm and then go fishing or whatever it is that Dads, Grandfathers and boys do fun together! Very cute. He also figured out that Papa was off work the day of his transplant and asked him to come up to be with him that day. So, I am hoping that the majority of the bugs are worked out with the girls. Just trying to line up some projects for them and get the electronics lined out where they can actually see us. It will be hard but am hoping that they make it ok. As long as we can talk through this as it comes I think it will be fine.

So, next Thursday is out Admit date. He will get a port and a feeding tube at that time. I am very nervous about the bleeding he may encounter. We will go several hours before the surgery to get Platelets and Factor. Hopefully, this will be enough! Chemotherapy will follow everyday until the transplant on the 20th. From there I hope that it is uphill and the Transplant does not have to be re-done. If his numbers arent coming up enough then they will pull the 2nd Umbilical Cord and Transplant that as well. I am very greatful to the families that donated the cords so that my baby can be given life!

I look forward to calls, texts and email from friends and family. Unfortunately, we ask that there be no visitors other than our household. The flu is so horrible right now I dont want to take a chance at all. He can not have anything brought in from the outside either. So, no flowers and balloons or yummy foods. I know, those things really cheer you up. However, you can email me for Quinn and I will make sure he gets it. I will have my smartphone and computer equipment there with me and will check it frequently. if you dont have my phone# and email address send me a PM and I will send it back across. I know the "September Leaves" will be watching closely but to let you know the email address differs from what you have on the site.

I fell a week and a half ago on my left knee and went for an MRI last night. The swelling is horrible and can barely get a sandle on my foot. Range of Motion stinks and can hardly go up the stairs at all. Waiting to hear from the Doc this afternoon what the outcome is going to be. I sure hope that it is better by the time that we go. There will be so much to bring in by myself and lots of steps to take at the hospital. Childrens Mercy is pretty big.

Fingers Crossed!